A mum's diary through her 2 year old's cancer journey

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My blog posts these days are few and far between. This is because i have less of an urge to publicize our cancer journey with Cody as well as less of an urge to talk about it all because we are living it every, single, day. However, it has been quite some time so its time for an update.

2016 has truly been the worst year of our lives as a married couple for Ben and I, or just the worst year of our lives full stop. The ONLY way i can describe what its like for your son to have cancer is that its like being on a really scary roller coaster that is constantly full of ups and downs and yet you can’t get off it. The last 6 months has just been up and down. Initially it was just a downer for the first bit. But when Cody gets a week’s break from chemotherapy we get on a high.

In our little family of me, Ben, Jack and Cody we all react off each other. If I’m in a bad mood, then it brings the mood down for all of us. If Ben has a bad day at work, we feel for him. If Jack has a bad day at school, we feel for him. And If Cody isn’t feeling well, we all feel his pain too. When i see what Cody goes through, when i watch nurses pierce his gentle baby skin to access his port, when i see him in tears because his body has a fever, when i have to hold his wriggling body down for every blood test, it causes my heart to physically ache for him. But. When he is feeling good and well, its like the house is just full of happiness again. We all feel happy. When Cody laughs at Jack making fart noises or when Cody shakes his little booty to that stupid Pen Pineapple song, my heart heals itself again.

The days when Cody is good gives me a glimmer of hope that he’s still there, our little Cody bear is still there. The Cody that goes to hospital and screams and cries all day is not the real Cody. So it is nice to know that even know he has been pumped with toxic drugs and his body has been fighting against itself, that the real Cody is still there.

Starting this Thursday, Cody will be starting a 5 day week of chemotherapy. Just like usual, same old, same old. The only difference is, this 5 day week of chemo will be the LAST 5 day chemo week! He then has a 2 week break (or thereabouts, depending on how his body handles the 5 day week) then he has a 3 day week of chemo. Then a rest. And then…that is the end of Cody’s treatment plan!

Cody will then have lots of tests done, CT scan, MRI, Ultrasound, etc to make sure that the cancer is gone. IF he gets the all clear, we then just go back for monthly reviews, but no more chemo. Apparently, his hair will grow back in about 6 weeks. His body might go a bit ‘funny’ such as eczema or hay fever because his immune system will start to work again. His immune system has been completely suppressed by the chemotherapy for the last 6 months, which is why he picks up pretty much every germ in the air. So it will finally start working and his body will return to working like a normal human again. His bone marrow will return to producing blood in a normal manner once again. But most importantly we’ll have the real Cody back to us every day.

I am so excited for his end of treatment, but very nervous. I don’t want to build myself up too much and keep thinking that its the end of our ride. What the hell would we do if they did all the scans and told me the cancer was still there? Or what if he had another tumor?
The one fact I am clinging to is about 2 months ago, the Doctor did a CT scan of Cody after the tumor was removed and we got the all clear then. The reason we still keep doing chemotherapy is because there is the possibility of microscopic cancer cells being left behind.

So, say everything goes to plan and Cody gets off the roller coaster, what are we going to do? First things first (cue Madonna) “HOLIDAY! CELEBRATE!”
Yep, definitely going on a holiday at the end of all this rubbish and i darn well say we deserve it. We have hopes to go to the Gold Coast at some point. Heck, I’d love to just move there, Ben could quit his job and we’ll live on a house on the beach and drink Cosmo’s all day in the sun, and my body will suddenly transform into that of Scarlett Johannsen and we’ll find a briefcase full of money…er, hang on I went too far didn’t i? Oh well, a girl can dream…

I am, however, looking forward to having a lot more free time on my hands.. Also, looking forward to not spending our weekends in a hospital room! We’ll have more time for our families and our friends and for each other. Me & Ben just want to be a normal family again and see our baby healthy again.

Just thought it was time to give an update on Cody’s progress. We are currently in week 3 of chemotherapy and so far so good.

Up until a month ago, I thought chemo was just one medicine called ‘chemo’ and had no clue as to how it all works. So I would like to give you all a basic idea of what Cody’s treatment is like.

It turns out chemotherapy is the term used to treat cancer, but consists of several different types of medicines given at different doses and stages so that the blood levels maintain a steady up and down level.

So during his first week of chemo, he had a 3 day week where he was treated with Doxorubicin, Vincristine and Cyclosphoside – big words huh? It sounded like gibberish to me at first too, but I’m slowly learning the words and pretending to sound like an intellectual when i say them. Except for when I stuff up the words and make up my own like ‘Cancer-oxide’ or ‘Chemo-cristine’.

During the Cyclosphoside days he will experience nausea, so needs to take anti-nausea medication. But the anti-nausea meds can make him constipated so we need to give him Lactulose to combat with that, its funny, but awful at the same time.

Week 2 and Week 3 we were only in for half a day, for Vincristine – this is the drug that makes your hair fall out. Aah, we all know that one!

Ive been checking Cody’s hair every night when I bathe him. Monday night was the first night I noticed hair loss but it wasn’t a big chunk of hair like I had imagined it to be. I rinsed his hair and a couple of strands came out & thought it could be nothing, but when I rinsed a second time more hair came out. And now that I’m aware of it, I find when I stroke his hair now, usually a few strands come out. I’m assuming it might happen slowly. Ben is eager to shave Cody’s hair – and he will shave his own hair at the same time to match. I’ve had time to think about the hair loss and even though its like having a sticker on your head saying “Hey everyone, i have cancer”, his hair has always been thin anyway and he’s a boy, its really not a big deal to us.

So next week will be a big week of chemo. We will be in for 5 days worth of Cyclosphoside. Our doctor offered us the option of staying in clinic and traveling home each night, OR staying in the nice ward area and sleeping there for a week – We chose clinic. I have a Ben, a Jack, and a King Size bed waiting for me at home and that’s far better than what that the hospital can offer me!

A few people have mentioned to me that it seems odd that Cody is going in for treatment for a week here and then a day here so i hope this helps explains things better. Its all so his blood levels have a healthy up and down balance. The treatment plan that he is on has obviously been created to give medicine to Cody no more than what his body can handle. His blood work so far has been very much to plan, high one week, low the next, so that is good.

Cody. How is Cody going with the treatment? Well, if you came to our house any given day you would not know he was a sick little boy. He’s still full of energy and is usually running around the house or dancing most of the time. This is great and I’m cherishing it because I am fully aware he won’t be like this for long. He will soon get more anemic and sick. Surgery will be somewhere around week 6 or 7 and things will probably keep going downhill. Right now it is the calm before the storm.

When people say to me take one day at a time, I really do now, we have to! If I think about the ‘what if’s’ too much I would turn into a big Debbie Downer. So one day at a time, meaning today, Cody is a happy little chap, which means today is a good day 🙂

I have always wanted to start up my own blog, but i could never think of a subject matter intriguing enough to do it. I am a stay at home mum of two beautiful boys, Jack, 5 and Cody, 2 and my husband Ben is a Gyprock Fixer. Sure, i guess i could write about life as a stay at home mum and talk about my day to day shenanigans of poop stories, how to discipline kids, how to bake cookies and how to start toilet training, etc but now, none of those ‘normal’ day to day things seem of any importance now. Literally, like Metallica told me “Nothing else matters”.

This last week has been the worst of our lives. With my insomnia kicking in, i thought of an idea, we wont be able to afford therapy, so my therapy will be just this, writing it all down. If i can get enough people to read my blog, it might be a good way to make a tiny bit of money on the side to help us out in the months ahead.

In the last couple of weeks we noticed our Cody bear had a bit of a swollen tummy. We thought he was constipated so have been giving him lots to drink & purees, etc. On Monday morning he woke up crying and seemed very distressed, Ben pressed his tummy and he went hysterical. We’ve all had a round of colds so i was sick of going to our local GP, it was Ben’s turn, so Ben took Cody to the Doctors. I waited at home with Jack with not a care in the world, knowing full well that Ben would probably get sent home with a bottle of Coloxyl to get that turd out. My first bit of worry came when Ben got home and told me the Doctor wanted to arrange an Ultrasound on Cody’s tummy. Who would ultrasound constipation? Whatevs, seeing as the Monday was a public holiday, I’d just get the ultrasound done tomorrow.

Monday night, 1.30am (okay, no, technically that’s Tuesday morning isn’t it?!) Cody wakes up screaming and screaming, i cant console him. I press his tummy, that makes him worse. I give him Panadol and went back to bed. But i couldn’t sleep, something didn’t sit right with me and i could still hear whimpers from his bedroom. My mothers intuition kicked in and i told Ben i was going to take Cody to the emergency room, he agreed that was a smart idea and stayed home with Jack.

Modbury Hospital on a public holiday, i was expecting it to be packed, but it was completely empty, not a soul. Got in the emergency pediatrics straight away and the doctor saw us immediately. Cody was not impressed. I tell you this now, Cody is 2 and he’s a wiggler. We rarely take him to restaurants because its all too hard chasing him around. He also hates people touching and grabbing him. So that information alone has added to the stress of this week. The doctor felt his tummy and said there was something there, he just didn’t know what, and that’s when more butterflies came. Ive seen lots of doctors for every day things, and most of them talk in a monotone voice. But this doctor was talking almost enthusiastically as if he had found a challenge, this isn’t good news, i knew it then. Anyway the hospital doesn’t do ultrasounds at night, so i had to wait as planned for Cody’s ultrasound in the morning. The doctor sent us home with a bag on Cody’s willy to get a urine sample.

Got home about 4.30am and put Cody back to sleep and i got into bed with Ben. We were both worried so spent another 2 hours just talking. The Radiology clinic opened at 7.30am and i rang and got an appointment for 8.30am. I closed my eyes and went back into a sleep again. Crap, its 8.15am and i have to be there by 8.30am. It usually takes 10 minutes to get there, but with peak hour traffic, i didn’t arrive until 8.40am. I ran to the front desk with my forms from emergency room and told the girl how sorry we are that we were late, but this is an emergency ultrasound. The girl had a deadpan look on her face.

“Yes, but your 10 minutes late”

“I know, we’ve been in emergency all night, please can we still get in?”

“Well hold on, I’ll check with the radiographer” She rolls her eyes and makes a call and i hear her muttering “Yes, obviously, ok” she turns to me and says

“Yes, as I’ve already said you are 10 minutes late so there is no possible way i could let you in, we’ll have to simply reschedule you in”

“Please, this is an emergency though”

“Yes im sure it is, ill get you in at 11am” My heart sinks and i take a moment to restrain my self from punching her heartless face. I was a Receptionist too before i became a mum, she ain’t anyone special, get over yourself!

I went to the shops to kill some time and rang Ben and had my first cry. I got something to eat and then the phone rang. It was the clinic and a different, nicer girl on the phone that could get the ultrasound in at 10am. Woohoo!

Fast forward to the ultrasound, as i said, Cody HATES being poked and prodded, so getting pictures of his tummy was flaming difficult, lots of crying. At the end the Radiographer was super smiley and seemed a little nervous, i started to sense something was wrong. She then told me she just needs to go in another room and have a closer look because apparently she just “takes the pictures”. She left the room and i sat with Cody in silence. waiting. and waiting.

Then i hear the PA speaker go off “Could we please get Dr. So & So to look at a scan in room 6 immediately”. My heart sank and i burst in to tears, this isn’t good. I said a quiet prayer while i waited. Finally, 3 or 4 professional looking people came back in the room, all with fake smiles
“Hi Elise, and how are we going today?”
me – “Just tell me what it is…”

“Ok, we’ve found something on Cody’s right kidney”

Me – “Is it poo? because he’s been constipated”

“No.”

At this point, they might as well have kicked me in the guts and it would’ve hurt less.

They continued…

“No, we’ve found a large mass on his kidney and we believe its a Tumor, we are booking you in to the Paediatrics outpatients right now for our head doctor to explain some more”

“Is it cancerous?”

“Yes”

The C word. He said my curly haired, blue eyed, train-loving baby has the C word inside his tiny body. There are no real words to describe how i felt. I guess i could say it felt like someone had come along, scooped all my insides out and left me a hollow shell. I was a mess. I rang Ben immediately in tears. Ben heard me crying and started crying too he starts shouting “What? what is it?” I let the words fall out “It, it, its a tumor, its a cancer tumor”. We both just cried. Its so hard typing out this experience, but i need to release it.

I told Ben he needs to take Jack to his mum’s house immediately and to come to the hospital. I rang Ben’s mum, Di. Still choking on the words, but managed to spit them out. Then the nurse came in and did the traditional thing that everyone does in a moment like this “Would you like a cup of tea sweetheart?” I must’ve said yes because she came back with one, but i didn’t touch it. She then sent me back into the waiting area. There i am sitting next to a bunch of pregnant ladies and blokes that have broken their leg on a motorbike, sitting holding Cody, sobbing. The pregnant lady asked if i was OK, i replied “No, i just found out my son has cancer”. I couldn’t bare to sit there any longer, so i put Cody in the pram and paced the hallways instead. I rang my mum, she didn’t answer, then i rang my dad and told him, everyone’s reaction is the same. Complete devastation.

Ben arrived within 10 minutes, i saw him at the end of the hallway and Cody got excited and ran up to him saying “Daddy, daddy!” all excitedly. We all just held each other and cried in the hallway. The deadpan receptionist walked passed us, she looked guilty, caught my eye and gave me a half smile. I looked at her like a Lion about to kill a Zebra in the wild. The cup of tea nurse led us to outpatients ward. We had to wait about 2 hours before we got to see the doctor. I cried for the majority of that time.

When we finally did see the doctor, she told us that Cody has a 10cm mass on his right kidney and believes it is called Wilms Tumour. I wanted to do an Arnie and yell “ITS NOT A TUMOUR!” but didn’t seem the appropriate time. She spoke a lot but i didn’t hear it all. She arranged for us to go to Women’s & Childrens hospital the next day for Cody to get a CT scan of the tumor because it will give us a better look of what we are dealing with.

We went home like zombies. Di came over and brought Jack home, i had missed him so much, and she made us soup for us. Me & Ben discussed if we wanted to keep this a secret or let people know. We figured we’ll tell close family & friends first and then a few more at a time. That night we rang some people to break the news. I honestly, felt sorry for them, because there is nothing they can say or do, to make Cody not have cancer, its just a helpless situation.

I tried to sleep that night, but instead spent most of the night crying. Night time is the worst, when the house is all quiet because your thoughts override you. I rang my mum at 2am, just to talk and cry.

The next day we went to Women’s & Childrens. I really had no idea what to expect. We were sent to DOSA (Day of Surgery Admissions). I hate DOSA, the novelty runs out bloody fast. DOSA is a big waiting room filled with toys and stuff which is good, but is overcrowded with kids needing obviously day surgery things like Tonsils removed, Grommits, etc. We got there at 7am and we didn’t get the call to get his CT scan until 2pm. 7 hours of being in a waiting room with a 2 year old fasting, he hadn’t eaten since 7 o’clock the night before. As soon as they called us in for the CT, the butterflies started again. Only one of us could go in at the start if the scan for him to take the General Anesthetic. We decided i would go with Cody. They prep you for exactly how he will go when they give him the gas, but theory is a different story to practical. When i took him into the room he was screaming straight away. He sat on my lap and it took 3 of us to hold him down. We put the mask on him and he was screaming. The more he screamed, the more gas he breathed in. The breathing turned into heavy gasping, he’s eyes rolled backwards and his whole body went completely limp. More tears from me. It honestly felt like he had been choked to death, but the doctors reassured me its all completely normal and fine. By the time i returned to Ben I was a mess.

Once Cody was returned to us and awake he was once again, hysterical and took another 2 hours before we could fully calm him down and get him to eat and drink again. After that the Doctors visited us with the CT results. They calmly told us that they believe it is Wilms Tumor on his kidney and its very big. I asked if they would need to remove his right kidney and the Doctor scoffed and said “Oh hell yes, that kidney has to go.” Another bombshell. They then went into details of the plan. At this point i had shut down, i couldn’t hear properly and had gone numb.

Luckily, Ben held it together enough to get the information. The plan was – 6 weeks of chemotherapy to start with to shrink the tumor. Right now, it was far too large to remove, so surgery right now would be too risky. So hopefully the chemo shrinks it. THEN, surgery to remove the cancer and the entire right kidney. Followed by another round of Chemo just to really kick it up the arse and make sure there’s not a drop left.

The next day we returned to visit the Cancer ward and meet our Oncologist. When we walked in, it was very bright and modern and far different from the chaos of the rest of the hospital. We waited in the playroom and sitting on a table was a big basket of woolen beanies saying “Please take one” I cried. Another bombshell.

It was just all suddenly made very real and i was aware that this ward is our new home. Our Oncologist was lovely, she’s a mum like me and i have a feeling we’ll get to know her very well as she’ll be taking us through this journey. I felt immediately comfortable with her and she is sharp as a tac, she knows her stuff. She showed us the picture of the CT scan and went into further detail. The first picture showed that there was a line distinguishing the difference between the tumor and the Liver, but then another picture showed there was no line, it looked like it was a little bit joined onto the Liver. Hopefully the chemo will take it off the Liver, but its possible part of the Liver might need to go as well. Good news is that the Liver regenerates itself so it’s going to be fine…i guess. There were some big lymph nodes near the kidney too that she’s hoping the chemo will knock out, so we’ll see how we go.

She decided that Cody would need a biopsy just to confirm its Wilms Tumor. How rare is Wilms Tumor you ask? A Wilms Tumor affects every 8 kids out of one million. The doctor told us to buy a lottery ticket, so funny, yeah.

9 out of 10 Kidney Tumors on kids under the age of 5 are Wilms Tumors, and Wilms is usually very treatable with Chemo. But there is the chance that Cody could be the 1 out of 10 that its not Wilms Tumor but a more different, rare kind that is harder to find the cure. Im not thinking about that right now.

Cody had to fast again for his biopsy the next day (Friday). I fed him heaps on Thursday night, but because he is still affected from the General Anesthetic, he vomited up everything that i fed him. We got to DOSA at 7am. They didn’t call him in for the Biopsy until 3pm. Another day, 8 hours of waiting, no food for Cody since the night before and he had vomited up what i did give him.

They had to give him another General to do the biopsy. I couldn’t handle doing it again, so it was Ben’s turn. Ben was brave and took Cody in the room, while i waited outside, crying and praying. Ben returned 10 minutes later, eyes swollen from crying and agreed, that watching Cody’s body go limp from the General is just the worst. It is awful to watch, but a necessary evil.

After the biopsy when Cody woke up, he was once again hysterical, We spent from 5pm to 10pm, trying to calm him down until he eventually fell asleep. Ben went home and i slept at the hospital next to Cody. Absolute crap day.

While staying overnight i met another mum in the coffee room who looked like me, a walking zombie. The coffee jar wouldn’t open so i started losing the plot, the other mum joined me, then we laughed.

I said to her “You tell me why your in here and then i’ll tell you my story…” This mum told me her 18 month old son was playing in the backyard and he tripped and fell over and started crying. When she saw him, she was horrified to find a stick had gone through her son’s eye and into his brain. The surgeons had to cut open his skull to treat him and she has no idea if he’ll ever see again through that eye. My heart hurt so much for her, i was devastated to what she was feeling. I told her my story and we had a bit of a laugh and a cry over a coffee. Two strangers just pouring out our hearts. And then Cody had a play with her son in the playroom. I don’t even know their names, but i truly hope their son will have a speedy recovery.

We left the hospital at lunch time Saturday and we wont get the results until Wednesday. Once we have the results Wednesday, Cody will then get his chemo port inserted under his skin sometime next week, which will mean he’ll need another General.

So here i am, Sunday morning, drained, empty but so happy to be home and knowing we don’t have to go back to hospital until Wednesday makes me feel like i’m on holiday.

Over the last few days more and more people have found out and i guess i might as well do a Facebook post. Not sure how to word it, the only wording i can think of is “Hey everyone, Cody has Cancer, peace out” but probably inappropriate. I feel like my personality is already changing, i’ve been a lot more blunt, insensitive to others and have had a lot of rage and of course sadness.

The amount of messages, gifts and love from our family and friends has been truly overwhelming. Me and Ben feel so loved and we know we are going to get through this because of that network of support. Any problems we have or have ever had between ourselves or other people don’t matter anymore. All that matters right now is that Cody gets better. So yes, one day at a time. WE WILL GET THROUGH THIS.